GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

[cansado]

Consado,

Whoopie!!!:victory:

This is great news from our pioneer patient. Hopefully the rest of your body will follow on this good track and you will begin to feel better. Your experience is so important to some of us "beginners." I am also a moderate to low responder (or low to moderate! ) so I will probably take a long time to respond too.

It is wonderful that you no longer test positive by culture and that you NK cells are up. I think all of us taking GcMAF know that it is doing "something" but it is great to hear actual lab reports. Four of us get our 5th injection this week.

Sergio has a question for you: when you say that your leaky gut is better, do you mean your CD 14? And if so, can you say more about that? It seems that as far as some papers that he has read, CD 14 is a marker for macrophage activity. However, KDM seems to consider it as a marker for bacteria passing from the gut to the bloodstream. Do you know KDM's thinking on this?

Sergio send his congratulations too. Whether CD 14 is a marker for macrophage activity, leaky gut, or both, improvement is a winner!

Any word on your progress or experience is golden to the rest of us, so thanks for using your limited energy to post here.

Best,
Sushi

Thank you all for the encouraging words. I am optimistic with caution though.

I believe that KDM looks at the CD 14 as a marker for leaky gut. But I have read the same as you did Serg, so I am not sure. My CD 14 score is actually below the reference range. Shouldn't it be up then?

I forgot to tell that we are at least continuing until 35 or more injections.

Dan is right about the XMRV. It is negative, but it is not gone. It is part of my DNA, and asleep.

Sushi I will be here when you return in April, and hope we can talk some more.

I am happy that I don't have any abx on my treatment plan anymore, and I only need to take the artesunate once a week.

I am glad to be a pioneer. I was really desperate. Still feel quite horrible although maybe the mornings are very very little better.

Well, I want to go into my meditation Hummmmmmm.

Thanks again xxx

 

[froufox]

Hi Aq, thanx, yes i wonder if its IRIS too. Also thats a good point about the LDN...it could be that is helping to mitigate the inflammation somewhat in Sushi and Sergio's case couldnt it.

Unfortunately i dont seem to tolerate LDN either...i did experience some mild benefits from it eg brainwise & sleep, but my gut doesnt tolerate it...it seemed to wash everything/all the good bacteria out which caused me to lose too much weight. I tried it lots of times but I always got the same reaction, no matter how tiny a dose i took. So i cant take it consistently.

I dont know if its to do with the link to TH17, which it lowers, causing opportunistic infections like candida to flourish, or for some other reason, who knows..

http://forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone/page39

I wonder if it's IRIS?
sushi and serge1942 are both on LDN. maybe that's taking the edge off their IRIS?

 

[Sushi]

Hi guys,

MY GASTROSCOPY + BIOPSY:

I had my gastroscopy with biopsy this afternoon, and I wanted to report on it, as I was knocked out, unlike Vli, so we can compare, especially since KDM seems to be prescribing it often.

The procedure was awesome for meI was injected with Propofol. I dont even remember falling asleep. I just had very vivid dreams, and then I woke up for a second, and when I tried to say: I am still and I started dreaming again! When I woke up, after 25 mins or so, everything had been doneI just said: Fantastic!!!! :victory: I was completely high on Propofol, laughing and talking in English with the nurse/Doctor/anesthesiologist (bear in mind that I am speaking in English with Sushi everyday, so my brain was super confused...Imagine the faces of the doctor and the nurse, who did not speak english . I couldnt convert my thoughts in to words, and started to laugh my head off

Anyway, aside from this funny anecdote, I am very grateful I was so coward to choose to be put to sleep during the endoscopyBTW, Sushi witnessed the whole intervention, so she has a complete different and reliable memory of what really happened in there! ;-)

Best,
Sergio

Well, even though he was dreaming, he was babbling in some language that was neither Spanish nor English (Spanglish?) until they shot him up with more propofol! Of course a tube down your throat can corrupt even the most erudite speech into blathering!

We all deserve a good "trip" now and then, but the medical team did seem surprised at him rolling around on the table laughing hysterically!

Sushi

 

[froufox]

Hi Sergio

Glad to hear the gastroscopy went smoothly! Very funny story too lol It will be interesting to see if they find any more viruses in your gut.

Sorry you've been feeling angry and down too, as u say its all part of our physical state so its no surprise that our mood & neurotransmitters are affected too. I have had irritability aswell... I feel with me its defintely endocrine related. I woke up today feeling even more dreadful... not so much depressed, just loads of inflammation again and completely tanked adrenals...just felt so weak, braindead with a stiff, crunchy neck! Why arent things straightforward? lol I dont know if the acupuncture i did yesterday has aggravated things. But late afternoon/early evening my adrenals usually pick up and so i feel a bit better now. Also i took an adrenal supp i found in my cupboard so i think that has helped a bit too.

Thanx for the good wishes, the same back to u too!! Good luck with everything.

Frou

 

[froufox]

Haha very funny Sushi!

 

[Nabo]

Sergio and Froufox,

I feel the same way as you feel.
It started around my 7th shot gc maf.
The time when i also felt worse and worse with my headache and fatigue.

A bit like a depression, anger, i feel irritated all the time!
But since a few days those feelings are gone.

So i think it had something to do with the gc maf.

It was really scary i felt so down and depressed, had to cry a lot.

So thank god that it is gone now!!

 

[aquariusgirl]

Dr Maes has written about the connection v. cytokines and depression....Frank posted a link to one of his papers on here but I can't find it.
But if you google Maes ( a pyschiatrist) you'll find plenty of stuff.
My money is on the cytokines.

 

[froufox]

Hi Nabo

Sorry you went through a really rough time on the GcMAF aswell, but thats good news that those symptoms have stopped now. I can really relate as some days have been very bad for me too. Have u any idea why they have stopped now? Did u do anything specific to try and deal with them, or did u just stop the GcMAF? Sorry if ive missed some of your posts.

Just to let everyone know that I received a reply to my email from KDM's clinic today advising me to lower the dose to 1/5th of the normal dose, so they have told me to take 20ng per week for the next 4 weeks. So I will try that.

Yes I defintely agree with u Aq Girl about the cytokines and depression, but I think a lot also depends on the ability of your endocrine system to step up to the mark to deal with the inflammation so i guess its like a chicken and egg thing with the immune & endocrine systems being intimately connected... I have low cortisol which doesnt help!

 

[Sushi]

Just to let everyone know that I received a reply to my email from KDM's clinic today advising me to lower the dose to 1/5th of the normal dose, so they have told me to take 20ng per week for the next 4 weeks. So I will try that.

Hi Frou,

Do you think they meant for you to inject 5 times from the same vial? I only took partial doses the first 3 times and the doc here said that I couldn't use the GcMAF remaining in the vial a it wasn't sterile. I am taking it IV but he said the same for IM.

Still I refroze it thinking maybe I could use it sublingually or something.

What do think?

Hope this strategy works for you!

Sushi

 

[froufox]

Hi Sushi

Yes thats what I assumed they meant, but she didnt actually say...it was just a very brief email telling me to lower the dose, no more information than that. So thanks for letting me know what your doctor said, I will email the clinic again tomorrow and ask and let u know what they say.

Its a bit annoying if it is the case that u cant re-use the vial again once its been opened because obviously they should have clarified that! I was just going to keep it in the fridge once i had opened it, i didnt think about refreezing it again.

Just curious, what dose did u take the first few times?

Thanx again, i will let u know if i get any more info!

Cheers

 

[Sushi]

Hi Sushi

Just curious, what dose did u take the first few times?

Cheers

The first 2 weeks I took a half dose and didn't feel I could have handled more. The 3rd week I took 3/4's dose and since that went OK, the last two have been full doses. The hardest week was after the 4th dose--could have been IRIS? This week I haven't had anything but feeling sluggish.

I am also continuing detox and anti-inflammatory strategies including high doses of curcumin, 500 mg of niacinamide, Far Infrared Sauna, psyllium, LDN, antihistamine....I am also taking high doses of magnesium.

Not sure what is doing what, but so far so good. Did you ever see your inflammatory cytokine markers to know where you started? This could be a factor as mine were normal except for IL 8--which was high but nothing like the results some others have had. Again, don't know why, but might be the LDN.

Best,
Sushi

 

[froufox]

Thanx Sushi i wasnt aware that u took lower doses to start off with, so i must have missed your previous posts about that. Maybe that explains why i have been feeling so awful, because ive been on the maximum dose the whole time!

Thanks for sharing the list of things u find helpful. I find that niacinamide helps me too though not when the symptoms get very bad. I do find magnesium helps, mainly with my brain...my thoughts seem to connect better after i do an injection or after a mag bath, so it seems to lower inflammation, by, i assume, lowering the excitotoxicity (at least sometimes anyway!)

Yes thats an interesting point about the LDN & cytokines/IL-8. No, i have never had my cytokines tested before so this is the first time with KDM. Im itching to know what the results are!

Hope things continue to go well for u. Take care. :Retro smile:

 

[Ronan]

Anyone else notice a slightly raised body temperature a few days after the GcMAF? I haven't used a thermometer but i have this idea that my body temp is slighly raised... maybe its just my imagination?

 

[Ronan]

So i just tested with a thermometer and im spot on the normal 37 celcius. Why do i have such a sweat on then??

 

[Overstressed]

Dan is right about the XMRV. It is negative, but it is not gone. It is part of my DNA, and asleep.

Hi Cansado,

did KDM tell you this ? On what proof does he claims such statement ? I, very much like to believe that Yamamoto was not telling crap with his studies, and that people really get rid of the virus.

Maybe you don't have the virus anymore ?

I'm getting my 40th injection, and if I look at my urine, compared to that of a year ago, it is cristal clear now.

Take care,
OS.

 

[leela]

Hi Cansado,

did KDM tell you this ? On what proof does he claims such statement ? I, very much like to believe that Yamamoto was not telling crap with his studies, and that people really get rid of the virus.

Maybe you don't have the virus anymore ?

I'm getting my 40th injection, and if I look at my urine, compared to that of a year ago, it is cristal clear now.

Take care,
OS.

The nature of a retrovirus is that it uses reverse transcriptase to write itself into your DNA. Other viruses do this as well, like the herpes family of virus, though they write it directly to your DNA. This is not problematic until something reactivates it and causes it to replicate or bud out.
With both RNA and DNA viruses they will always be with you, you will never "get rid" of them, just "turn them off" if you're lucky.
This is the science as I understand it, and is easily available on an internet search.

I don't believe Yamamoto was "telling crap". I doubt he anywhere claimed the virus was "gone". He claimed it became inactivated, which is what all scientists know is the only possibility when dealing with RNA or DNA viruses once they have integrated themselves into your DNA.

 

[Dan_USAAZ]

Hi Cansado,

did KDM tell you this ? On what proof does he claims such statement ? I, very much like to believe that Yamamoto was not telling crap with his studies, and that people really get rid of the virus.

Maybe you don't have the virus anymore ?

I'm getting my 40th injection, and if I look at my urine, compared to that of a year ago, it is cristal clear now.

Take care,
OS.

Overstressed,
I would recommend that you read the original quote before you dump on it. Mojoey had asked if, because Cansado had a negative culture test, that means he is now XMRV negative.
I responded with the following:

"I believe a negative XMRV culture test just means that no active virus was found circulating in the blood at the time the blood was drawn. It does not mean that you are XMRV negative, but it is better result than being culture positive."

Could he be XMRV cured? Possibly, I suppose, but the negative culture test by no means proves that he is XMRV negative.

I ,for example, am culture positive this month. With taking no medication, I could be culture negative in two months from now and then culture positive again 3 months after that. It all depends on my current state of health, how my immune system and XMRV antibodies are functioning, etc.

Now, I am also XMRV positive by serology and I believe that I would likely always be positive by serology until someday this terrible illness/virus is cured.

As to where I get my info, mostly WPI, VipDx and the internet. I am most certainly not a medical professional and welcome any who can correct and educate me.

Thanks,
Dan

 

[aquariusgirl]

I don't think we need to pile on Overstressed.
If i recall correctly, he has a lot riding on this therapy...and has been somewhat disappointed in his results.
Also, English is a 2nd or 3rd language.
The way I read his post, he hopes that gcmaf can put retroviruses into remission.. but is a little skeptical.

 

[leela]

Just for the record, I was not piling. I was clarifying a point that was asked directly regarding "getting rid" of the virus, which is not possible.
Sorry if my post came off otherwise--that was not my intention.
As a polyglot myself, I am sensitive to the vagaries of speaking or writing in a language that is not native. I'm having a hard enough time
with my own right now
But aquariusgirl I appreciate your concern for OS, since there is sometimes entirely unnecessary unpleasantness here, which is always distressing.
Just not in this case

 

[aquariusgirl]

Yes, I appreciated your input. Not trying to scold anyone..I just thought there might have been some misinterpretation of his comment.